Something I have wanted to write about for a LONG time is being a runner with a chronic illness.
I am certainly NOT the only one, as in my circle of running friends I know several, and though we haven't gotten into the nitty-gritty of it all, I am willing to guess we all face similar battles in order to do the things we love to do. Every time I line up at a race, I am already at a deficit. My training may not be as consistent as other runners, my nutrition not as good, I struggle with hydration and eating enough because of my GI issues, I have trouble regulating my body temperature so if its too hot/cold or *I* get too hot/cold it could be an issue. I have to carry an epi pen and Benadryl because though I know what foods I can't eat, I also randomly react to things that normally I wouldn't and need to be able to treat that...or I have to carry all my own food/drink. For longer races I have to worry about bringing medications and making sure I remember to take xyz at the right times. Sometimes I am not recovered enough from a flare to run a race and I have to drop, or sometimes the pain I live with daily becomes too much during a race and I have to stop. Sometimes a flare is coming and I think I can squeak by...and then it hits me full on during a race and, well, that is the end of that. Other times, everything lines up absolutely perfectly and I go out and run and have a GRAND time and love every minute of it because I know every good/successful race is a blessing.
It doesn't really matter what illness one has, Autoimmune Illness follows a pretty similar path: pain, fatigue, feeling unwell, various neurological/GI/insert-annoying-symptom-here. Add any disease specific issues you face and there you go. Not fun. And it is a HUGE battle to fight. I think the hardest part is that most people with any sort of AI (Autoimmune Illness) *looks* fine...yet they feel like they are dying on the inside. This adds a extra layer or 10 to the journey of fitness and health. In an ideal world, you would talk to a Personal Trainer (hey, like the one writing this!) and discuss your goals, what you would like to accomplish, talk about your diet and the changes that can be made, set up a schedule and off you go. If you follow it, 6 weeks down the road you will see some changes, and by month 3 even more, and so on. If you are dealing with AI it may look something like this: Week 1 and 2 are great, week 3 you are slammed with fatigue so severe brushing your teeth is a chore AND now you can't eat eggs because for some reason your body is reacting to them and making those healthy meals is too much effort so you you decide that potato chips and a glass of chocolate milk would be a great meal...for the next 3 days...week 4 you are better, so you can do half of your intended workouts and eating a *little* bit better but now your stomach is acting up preventing you from getting enough calories...and you have insomnia so your energy and recovery are not the best...Week 5 finds you feeling better so back at it you go! Week 6 and 7 are good, then weeks 8-10 find you in another AI flare which continues on for a month...At that point you might say, *why should I even bother? This isn't going to work/worth it/I can't keep up. I'm here to tell you that you SHOULD bother because you are worth it.
If you find yourself in this situation, being a person with an AI who decides that getting healthy/fit/strong is something you want to accomplish, you need to find someone who GETS what you are dealing with. It is not impossible for you to make health and fitness goals and even accomplish them, you may simply need more time, support, and a plan you can follow that is tailored for YOU and your specific and unique needs. As someone with 2 different AI's I ABSOLUTELY understand all of this. There have been times I have been sailing right along, feeling good, running all the time, working out, eating pretty well, sleeping...all my ducks lined up quite nicely. Then, usually at a MOST inconvenient time, the symptoms creep in...a little extra fatigue. Recovery is not what I expect. Weights that I had been lifting fine, feel a bit heavier. Needing to take more *rest days*...cue up my other symptoms and BAM, back in a flare. I am fortunate that it doesn't happen as often, but it HAS happened and it can be a week, two weeks or even months. There have been times I have had to give up exercise all together because I simply could. not. do. anything. It is hard, depressing, and makes you really think *why bother?*
The thing is, ANY sort of aerobic exercise and strength training, and it can be as simple as walking and a few body-weight exercises, is going to improve your health. In the many, MANY years of research I have done on AI's and their various *cures* just about every single one suggests daily exercise as tolerated. It has a myriad of benefits and I truly believe in my own case, the fact that I have been a runner most of my life and have run through most of my illness, I have not been sicker. And as bad as it has been at times, it COULD have been a whole lot worse. I have always tried to do SOMETHING whenever I felt well enough to do so. The increased oxygenation of your system, getting your heart pumping, fresh air(if you go outside) increased metabolism from exercise and strength training, and the MENTAL aspect...that alone has saved me as running IS my therapy.
That being said, it can be very frustrating to embark on an exercise and fitness program, start seeing results and thinking *Hey, look at me go!* only to fall back into a flare/relapse for xyz amount of time and think you have *lost all your gains*. The most important thing about that is, you simply cannot go there. You can't think *well why should I bother if I am just going to be sick again?* That is like someone who is looking to lose weight saying *well, why bother doing all this, I will just gain all the weight back.* Um, well if you set your mind that way...yes. You are right. But, if you allow yourself the space to simply roll with things, and know that yes, right NOW you can't follow your program, but in a week/month when you are stronger you can get right back on that horse. Because as you move forward toward your fitness goals, you may find your relapses/flares to be less often/severe/long. You have to be able to accept and recognize that YOUR fitness and exercise goals and progress are not going to look the same as your *healthy* neighbor. You have to be able to allow for the bumps in the road, knowing that you may veer off course for a bit but that you can get back on that Path again just as easily. And there is no hard and fast rule as to how long it should take you to meet your goals. They are YOUR goals.
I can absolutely and with total honesty say that my running has saved me on more ways than one. Yes, there have been times that I had to take days/weeks/months off and I did worry about losing fitness/muscle/endurance etc. And you know what? Sometimes I did. Sometimes it felt like I was almost starting all over again. There have been times I DID have to start all over. But the very interesting thing is, the longer you commit to and follow an exercise routine, the more your body remembers it. That's right, your body is pretty smart. In the beginning, you may find it truly feels like starting over. That is why I say find something you LOVE to do because even if you DO have to start over, who cares, its still fun. :) But as your body becomes more and more accustomed to your routine, it will take less and less time to get back to the fitness level you had before getting sick/relapse/flare again. I have seen it first hand in myself. I was out for 6 weeks in the fall with some health issues. Lost a good deal of muscle, hadn't run...when I was finally able to run again, I went from 20m/wk to probably 50+ m/wk inside a month and had reclaimed the muscle I had lost in probably a month to 6 weeks. It requires some patience on your part, but it is possible...you simply have to accept that your particular Path may have a few extra bumps and side roads than most.
That is the hardest part of having a chronic AI or any chronic illness. Acceptance. Realizing that this is your lot in life and somehow you simply have to make the best of it, play the cards you were dealt. I think it is EXTREMELY important to work with someone who *gets* this. Another reason I became a PT was because I DO get it, and I understand that a program with someone with a chronic illness can and probably will need to be changed up pretty regularly to accommodate where the person is at. It is also why I became certified in Sports Nutrition as well. :)
Another piece of the puzzle is obviously diet. Anyone who has listened to me blather on knows what I think of all the diets out there. I am VERY passionate about finding an eating plan that works for individual people in their individual lives according to their individual needs. Add an AI/chronic illness to the mix and usually all bets are off. Food sensitivities/allergies, special diets, diets that have to change according to where the person is in their cycle...all things I have done a ridiculous amount of research on and have used in my own life and am VERY familiar with. I believe that no matter WHAT your restrictions are, there is a way to make up an eating plan that is easy, enjoyable, and fits into your life.
Basically, my goal is to offer the support I wish I had when I was struggling. I wish I could have gone to someone who could have said *Here's what we'll do, here's what you can eat and this is how we will get through this...* Well, if you can't find it, create it :) and that is what I am hoping to do. I don't want anyone to ever feel the way I did, I don't ever want someone to feel like they can't do what others are doing because they got a few extra cards to deal with. I realized early on that I did not want to *become* my illness, it was not going to define me. I was a person WITH an illness, but I am SO much more than that. I want to help others to find that place as well. Illness is simply a chapter(ok, maybe 2) in your book. But there are PLENTY of other chapters as well. You can make those chapters anything you like, so make them great. :)